RPP 19 1 Neal Holme Rosemary Hanmore Consulting with Disabled Children and Young Persons: a methodological framework

Research Policy and Planning: The journal of the Social Services Research Group – Vol 19 (1) 2001

Consulting with Disabled Children and Young Persons: a methodological framework

Neal Holme, Research and Information Officer, Blackpool Social Services; Rosemary Hanmore, Partnership Officer, Social Services Directorate, Lancashire County Council

Abstract

This paper describes a consultation exercise undertaken with disabled children and young people who were attending at least one local authority, health or voluntary service in a new unitary authority. Current research has revealed little evidence of the ‘wishes and feelings’ of children and young people with disabilities being investigated. The method employed to investigate these views, comments on its evaluation and the main findings are described below. The success of this method in ascertaining the views of disabled children and young people is seen as enabling this group to forward their own opinions and assisting them to play an active rather than a passive role in the care they receive. The method has also been adapted locally to fulfil the statutory responsibility encapsulated within the Department of Health Looking After Children (L.A.C.) Records: Consultation form.

Background

During May 1998 an inter agency review of services to children with disabilities commenced in the new unitary authority of Blackpool. Its purpose was to review services to disabled children and their families, the results of which would be used to inform service development over the next three years.

Review Focus

The Social Services Inspectorate’s 1997 National Inspection of Services to Disabled Children and their Families focused primarily on listening to the ‘voice of experience’ and concentrated on the views of young people and parents currently using services. Article 12 of The United Nations Convention on the Rights of the Child (1989) stated ‘The child’s right to express an opinion, and to have that opinion taken into account, in any matter or procedure affecting the child’. Similarly the Children Act 1989 emphasised the local authority’s duty to ascertain children’s ‘wishes and feelings’, resulting in a statutory responsibility to show respect for the views of children (Lansdown, 1995).

The perspective of children is different from that of adults and in line with current practice it was decided the views of children and young people using services should be directly sought. To complement this perspective, parents’ views were also obtained. The focus of this paper is the method used to elicit responses from disabled children about their experience of services in order to contribute their perspective to the development of children’s disability services.

The statutory responsibility and the United Nations Convention both highlight the need to consult with service users, however, there is little evidence in the literature to suggest that this has taken place within local authorities on a whole scale nature. Morris’ (1998a) research into the way the Children Act 1989 is being implemented as it concerns disabled children found little evidence to suggest that disabled children’s ‘wishes and feelings’ are ascertained. The following is a methodological example of how a questionnaire format may be adapted and used by local authorities to elicit the viewpoints of disabled children.

Method

Planning Group

To facilitate the consultation with service users a planning group was convened comprising representatives from Social Services, Health, Education, the Voluntary Sector and parents of children with disabilities. The work of this group included the planning, implementation, monitoring and evaluation of the consultation process.

At the commencement of the consultation project the level of interest in participation was unknown. Therefore children were initially selected for interview by random sampling. The sampling frame was taken from the total group of children known to the social work team responsible for children with disabilities. Children known to the social workers had varying disabilities but each child’s disability was within the definition produced by the British Association for Community Child Health and the Department of Health (1994). From details provided by social workers two-thirds of the children known to them were selected using random number tables. Given the levels of disability of these children it was anticipated that each interview was going to be a lengthy procedure. In addition to carrying out the actual interview it was necessary for the interviewers to develop an in-depth profile of their interviewee by talking to parents and contacts at the services/activities used. This background information was seen as crucial to the success of the interview. The interviewers comprised mainly residential care staff who undertook the interviews as part of their normal day-to-day work routine. Given the length of time the whole process involved and the staff’s existing work commitments, it was not possible to interview every child with a disability known to the department. The decision was therefore taken to interview a representative sample and sample size was determined in terms of the demands that could be placed on the available interviewers within their normal working environment.

To ensure the children selected to take part in the consultation were representative, in terms of varying disabilities, stratified sampling was undertaken. This form of sampling ensured that children in the following categories were represented in the same proportions in the sample as in the total group known to the social workers:

  • children with a learning disability
  • children with a physical disability
  • children with a sensory impairment
  • children with autism
  • children with multiple disabilities

The total number of children aged 5-17 years known to the Children with Disabilities Team totalled 80, and 54 were selected using stratified random sampling.

In line with the National Children’s Bureau guidelines (1993), all children who participated in the individual interviews were offered compensation in the form of a voucher or free entry ticket in recognition of the time and energy given to the consultation process. Local private businesses and the Leisure and Community Services section of Blackpool Borough Council donated vouchers or free entry tickets to local amenities to serve as compensation.

Interview Process

Philippa Russell’s (1998) outline of good practice when consulting with children includes a list of key criteria. These criteria were followed and included:

* Parents should consent to the consultation and be fully informed about it.

Prior to commencing the consultation with the sampled children, their parents/carers were sent a letter seeking permission for the interviewers to contact the child. This method was used in the study by Mahon et al (1996) to investigate the impact of the Child Support Act. This process firstly seeks consent from parents to approach their child and secondly also allows the researcher to seek consent from the child thereby maximising the opportunity for the children to refuse or consent to the interview (Ward, 1997). The letter sent to parents also explained how the results of the consultation would be presented and the anonymity of responses was guaranteed in the presentation of findings. To encourage the involvement of parents, those who participated were included in a prize draw.

In addition to permission being sought from parents, every effort was made to obtain the informed consent of the children selected to participate in the consultation. The need to obtain informed consent was also addressed in the training session. The ethical issues of researching children have been comprehensively covered in Beresford’s (1997) literature review of research techniques used to obtain the views of disabled children and young people. One of the key ethical issues identified by Beresford concerns obtaining informed consent. Our attempts to obtain informed consent were based on Bersoff and Hoffer’s (1990) identification of three characteristics. Firstly, in all probability disabled children and young people will not understand the research process. The interviewers were instructed, prior to the interview commencing, to verbally explain in an age appropriate way the reason for the consultation and its format. The key here was to use age appropriate information whether it was in a verbal or other format such as pictures/cartoons (Tymchuk, 1994). Secondly, the interviewers were told to let the children know the voluntary nature of their participation and the option to terminate the interview at any time (Ross and Ross, 1984). Informed consent should be seen as a central part of the entire interview process which allows the children to withdraw from their interview at any time (Morris, 1998b). The interviewers were instructed to check during the course of the interview the child’s willingness to continue. In an age appropriate manner the children were also to be assured of the confidentiality of their responses. Thirdly, the interviewers sought the child’s consent to participate by using the ‘thumbs up/thumbs down’ pictures or those depicting a ‘smiley face/sad face’.

* Interviews should be conducted by someone the child knows well.

As communication issues play a key role in many of the children’s disabilities, particularly children with autism and children with learning disabilities, it was decided that individual interviews with children/young people would be conducted by interviewers with whom they were familiar. It was acknowledged that bias might arise on the part of the interviewer if eliciting views about their own service. However it was felt that any risk of bias would be outweighed by the benefits of the child/young person feeling relaxed with their interviewer and the interviewer being able to respond to the individual’s particular communication needs.

* Words are unlikely to be sufficient: photographs, pictures and other communication aids will be useful.

Each interviewer had access to a pack containing photographs and drawings depicting the various activities undertaken by children/ young people when using or attending particular services. These were used as ‘prompts’ or ‘cues’ for the child/young person. Although some colour photographs were included in the pack, due to costing implications, the pack comprised mainly black and white photocopied photographs.

The photographs and drawings were categorised into ‘centre based activities’, ‘activities outside the centre’ and ‘sleeping over’. The photographs used were very specific, for example a photograph was available of each service location and its related activities. In addition there were photographs and drawings to help children/young people decide which new or different activities they might like to try. Interviewers were asked to also obtain personalised cues from parents/carers, such as the child/young person’s overnight bag to represent a stay away from home.

* Questions should be simple and direct, and verbal and non-verbal responses should be recorded. Open-ended questions should be avoided.

Symbols were available for the interviewers to obtain a positive or negative response from children/young people unable to communicate verbally – for example a ‘smiley’ face and a ‘sad’ face, ‘thumbs’ up and ‘thumbs’ down, a ‘tick’ and a ‘cross’.

* Interviewers should communicate in ways that are normal and natural for the child.

Interviewers were asked to present the questionnaire to each child/young person in a way which reflected each individual child/young person’s age, understanding and communication abilities.

* Test the language of questions with a small group, to check that the language used is easy to understand.

A draft version of the children’s questionnaire was piloted. A pilot interview was conducted with an 11 year old child. The interview experience and feedback from the child, via his mother, was used to produce the final version of the questionnaire.

Questionnaire Design

Child centred priorities were highlighted for review such as respite care and the identification and development of community and leisure activities and these were used as the basis for the questions. A standard format was developed for the questionnaire and the intention was for the standard format to be then adapted for each individual child or young person depending on their abilities and level of understanding.

The following questions were presented to each child about each service they received:

  • how they felt (happy/sad) when either taken to the service or when the service came into their home. The service was presented to the children and young people in a personalised way. Photographs of familiar buildings, names of staff and a familiarity with the child’s routine were all acquired by the interviewer prior to the interview session in order to make the subsequent interview as personal as possible for the child/young person; and
  • the reason(s) for their feelings. A set of reasons were presented individually to the child/young person in a personalised format using as appropriate photographs, cartoons and drawings.

Questions for each service were kept succinct and had structured alternatives in order to keep the respondents focused and within their concentration span. Plenty of space was available on the questionnaire to record interviewer comments on non-verbal behaviours and any other relevant comments/behaviours made by the child or young person.

At the start of the interview the interviewer had a questionnaire sheet for each service used by the child or young person which had a number of personal details completed. Where appropriate these included which days of the week the service was used, start and finish times, activities the child/young person was involved in, who took them to the service, method of transport, where the service took place, and so on. The discussion with the child or young person was made as personal as possible.

Interviewer Training

To ensure a consistent approach was used by all the interviewers a training session was arranged and an ‘Interviewer Brief’ was produced which outlined how the interview was to be conducted. It was stressed that the interview should be an enjoyable experience for the child and one which was fun – it should feel like a conversation not a question and answer session.

Each interviewer was issued with an ‘interview pack’ which comprised three sections. The first section contained administrative details with a copy of the letter sent to the child’s parent explaining the consultation process and the signed slip giving parental permission for the child to be interviewed. The permission slip also included the parent’s contact address and telephone number so the interviewer could make arrangements to carry out the interview at a convenient time. Also included were a ‘business reply’ envelope (for returning the child’s completed questionnaire) and a form to claim travelling expenses.

The second section contained the appropriate questionnaire with the services used by that child highlighted. Along with the questionnaire there was a list of activities with which the child was involved and a set of photographs and drawings to be used as cues for the child. Details of a contact person for each service used by the child were also included. The third section contained the ‘voucher’ to be given to the child at the end of the interview.

Prior to the interview the interviewers were instructed to make contact with the child’s parents and introduce themselves as the child’s interviewer (parents would be expecting a telephone contact from a letter previously received). They were to agree the most appropriate place for their child to be interviewed, this might be the child’s home, a short break establishment or the school. The place chosen was to be familiar to the child, somewhere where they would feel relaxed and not ill at ease. The interviewer was to discuss the most appropriate time to interview their child, inform the parents of the approximate length of time the interview would take and tell the parent that at the end of the interview the child would be offered a voucher to compensate for their time and energy in the interview process. At a later stage the child would be sent a certificate signed by the Director of Social Services thanking them for their participation. The interviewers were asked to ensure the parents had no objections to the interview process.

Interviewers were asked to build a profile of the child by speaking to the contact person at each of the activities or services the child attended. The profile would include information such as which activities the child participated in, who drove the transport bus, and which days of the week they attended. Parents were also asked if they had any cue material such as photos of the child participating in a service/activity, or an item that represented the service, for example, an overnight bag taken by the child that could be used during the interview. The interviewers were then required to familiarise themselves with the child’s profile and relevant cues.

At the start of the interview interviewers were to establish a dialogue with the child in order to make them feel comfortable. As the interviewers were already very familiar figures to the children the establishment of rapport and two-way communication were not seen as problems. The interviewers were instructed to explain the purpose of the interview and how their responses would be used to develop services. A series of drawings were provided to help with this explanation. Before starting the interview the children were asked if they were still happy to take part and they were assured that they could stop the interview at any time they wished.

The interviewers were asked to plan the actual interview with the child very carefully. They were asked to be cheerful, relaxed and to be unhurried. It was felt important to give the child plenty of time to respond and to work through the questionnaire at the child’s own pace. If the child’s motivation dwindled it might be necessary to have more than one interview session. The questionnaire was to be worked through for one service at a time and a key element in the presentation was the personalisation of the questions. This ensured the child was focused on the activity/service being reviewed. The personalisation of the questions was developed from the information supplied by the contact person and parents, and the use of photographs, drawings and objects used (for example, an overnight bag) at that particular activity. The children were to be encouraged to handle these cues, and the interviewers were asked to observe their reaction to the cue as this reaction may be their only response. Emphasis was laid on not rushing the child’s response, interviewers were instructed to talk them through the cue, however, interviewers were instructed to discontinue using the visual cues if they were found to be more of a distraction than an aid.

To obtain a response the smiley face/sad face, thumbs up/down pictures were used, and the child could be asked to point to or pick up the appropriate picture or a ‘post box’ could be used. Interviewers were instructed not to show a reaction to the child’s response as this was felt to be leading the children into responding in a certain way. During the course of the interview if a child was able to or wished to elaborate on their response they were to be encouraged to do so. The child’s responses were to be recorded accurately, and care was to be taken not to translate the child’s response according to the interviewer’s own views. Throughout the interview observation was to be made of the child’s body language and a record made as soon as possible at the interview end.

When the interview was over interviewers were asked to explain to the child that they would receive ‘feedback’ on the outcome of the consultation process. This was achieved using a drawing which helped to explain this process. At this stage the interviewer was to give the child their voucher and to explain that they would receive a certificate at a later date from the Director of Social Services.

Confidentiality was seen as an important issue to mention during the interviewers training sessions. The child’s responses were confidential and parents were reassured that the responses would only be generalised in the consultation report. Interviewers were also requested to take care of the information pack as it contained personal information relating to the interviewed child. In addition, interviewers were warned that during the interview the child might disclose something that was disturbing. Hence, a strategy was put in place to deal with this possibility (National Children’s Bureau, 1993; Mahon et al, 1996). As soon as possible after the interview the completed questionnaires were to be returned using the ‘business reply’ envelope in the information pack.

Publicity and Launch of the Consultation

To ensure that no-one who wished to contribute their views was excluded, the consultation was extended and publicised. To publicise the consultation a number of children from a ‘short break’ home in Blackpool for children with disabilities participated in an art project, and the resulting paintings were used in the design for a publicity poster which was displayed in public places throughout Blackpool. The theme for the art work was in keeping with Blackpool Borough Council’s ‘Golden Mile’ project and the children’s paintings were included in the ‘Golden Mile’ display outside Blackpool’s Central Library.

Further publicity was provided by the local media – both newspaper and radio and the consultation was formally launched by the Chair of Blackpool Borough Council’s Social Services Committee.

In due course all participants received information on the outcome of the consultation. The children who took part were sent a leaflet which comprised simplified text and pictures to illustrate the findings. The children’s parents were also sent a leaflet outlining the main findings of the consultation process.

Findings

A response rate of 43% was achieved with 23 out of 54 parents/carers giving consent for their child to be interviewed. The majority (94%) of those using the Blackpool respite facility enjoyed their short stay although 39% suffered varying degrees of separation anxiety. However 28% enjoyed the break from their families. The sample number of children receiving short breaks from the Family Link Scheme and the Hospice was too small to draw any conclusions relating to this finding. Relationships with other children attending the facility were positive in 83% of children and 77% were ‘happy’ with their relationships with staff although a small minority reported feeling ‘sad’ when relationships with staff and their peer group were mentioned.

The activities on offer at each service significantly contributed to whether a child felt ‘happy’ or ‘sad’ with most identifying and enjoying the facilities on offer particularly sport. Some of the children’s responses indicated that there were some aspects of services they did not like. The findings strongly suggested that children’s experience of a service could influence their perception of that service. What is not known is how much choice, if any, children have in deciding which services they use.

The findings have been presented in an abridged format as the focus of the article concerns the methodological framework. A complete presentation of the findings and recommendations have been presented elsewhere (Hanmore and Holme, 1998).

Evaluation

To evaluate the interview process all interviewers were invited to a meeting to present verbal feedback and asked to complete a written evaluation form. Interviewers provided positive feedback on the interview process and provided a number of suggestions for the development of future consultation.

Overall interviewers felt that the children mostly enjoyed the one-to-one interview sessions. The visual prompts such as photographs and cartoon drawings gave the children or young people much pleasure as well as playing a vital part in the interview process. Interviewers felt that the environment in which the interview took place was an important factor in predicting success. A familiar setting where the child felt comfortable was identified as a key component in ensuring a successful interview.

It was recognised that using interviewers who were known to the child posed a risk of introducing bias into the consultation process as the respondents might wish to please the interviewer and respond positively to questions about the interviewers service. During the interviewer training session the possible risk of bias was thoroughly addressed to ensure the interviews were undertaken as objectively as possible and advice was given on methods that could be used to reduce the risk of bias. Prior to the consultation process it was felt an acceptable risk to take as it was necessary to use interviewers who were known to the children or young people as communication difficulties often required interviewers who were familiar with the child’s verbal/non-verbal nuances and who were able to understand their sometimes idiosyncratic responses. In a number of instances it was not possible to gain literal responses but rather the interviewer had to make inferences from their experience of communicating with the child. In addition it was found that some interviewers who did not know the child very well had difficulties establishing a rapport and developing a communication flow. For those interviewers who knew the child rapport was not a problem, in fact many interviewers reported that the children were very responsive about the services they attended regularly.

The findings indicated that this risk of bias had, in the main, not been borne out. Children were able to criticise the services they were being asked about even when the interviewer was a member of staff from that service. For many of the children a ‘like’ of the service was demonstrated not only in a verbal response but also in terms of positive body language and animated responses. However, a ‘dislike’ of a service or a particular aspect of a service was similarly demonstrated in terms of body language of a negative nature. Overall it was felt the responses from the children were not unduly influenced by the interviewer and did not detract from the reporting of negative feelings. In fact, the use of interviewers who were both known to the children and who were familiar with their communication methods in many cases resulted in a more in-depth consultation than would have otherwise been possible (see the comments below regarding the use of innovative methods).

Interviewers reported that the children/young people reacted well to the ‘cue’ cards and were able to actively participate in the interview by using ‘thumbs up’ and ‘thumbs down’ gestures. Comments were made that the children/young people were happy and relaxed throughout the interview and references were made about children chatting and laughing with the interviewer.

One of the key elements in the success of the interview process was in the personalisation of the service by using the carer’s name when asking questions about that particular service. Interviewers found that the children/young people responded well when the service was identified in terms of their daily/weekly routine. Despite the endeavours to construct a personal profile and a series of photographs or drawings of the services used by the children it was felt that this was not as successful as it could have been. For those children with a learning disability the photographs needed to be very specific. For instance, a general photograph of a home carer visiting a child’s house was shown to represent the home carer service. This was found to be too general and did not succeed in many cases in representing the home care service. A more child-specific photograph would have been more successful depicting the actual home carer who visits the child. Some of the photographs were reported as being too general and many of the children with learning disabilities found it difficult to relate to the photographs. The more relevant the photograph is to the child the better at evoking feelings about the service. The personal profile of the child needs to be highly specific and contain images of the child rather than containing many general photographs. Also they all need to be A4 in size and colour as some interviewers reported difficulties with photocopies not being clear enough. At the interviewer feedback session it was suggested that as many children found videos enjoyable to watch, a video showing the services used by the children would have been useful to grasp their attention.

A number of interviewers provided information on the validity of individual responses. Comments were made such as the child’s body language was consistent with the response to the cue cards and that children were ‘answering questions verbally and then backing up the answers with the cue cards’.

The method employed worked very well with children with a learning disability, however, it was reported by one interviewer that those children who had a physical disability and no learning disability could have given a much more in-depth interview. It was felt this group would have been able to provide more detailed responses if the interviewers had been able to probe further and the children had been given the opportunity to answer further questions. This was perhaps a missed opportunity as the questionnaire failed to take account of the varying levels of intellectual ability.

Social Services Inspectorate (1998) make reference to consulting with disabled children as ‘an area where imagination and innovative approaches’ are required to produce information. We found the interviewers were remarkably resourceful in their approach to administering the questionnaire. In many cases their familiarity with the interviewee enabled them to approach the questionnaire in a novel way. One interviewer described how she and her interviewee had used a number of cardboard boxes to represent her home, school and the services used and then acted out with the child her typical day. This method provoked not only a very positive response from the child but she also felt very comfortable and hardly noticed the interview was in progress. The interviewer felt this approach of playing ‘a day in the life of ….’ allowed her to access responses that would not have been as forthcoming within a more formal approach.

Conclusion

The purpose of the recommendations contained in the final review report is to influence the strategy for future services for children with disabilities. In accordance with the recent Social Services Inspectorate (1998) publication ‘Disabled Children: Directions For Their Future Care’, the consultation has sought to ‘gauge a representative view’ from children, young people and their parents/carers. The findings of the consultation raise issues for each agency involved in service provision and it is hoped that each agency will give the findings due consideration.

The consultation has been in-depth but should only be seen as a beginning. The success of the consultation has led the department to adapt this questionnaire format to be used with disabled children to form the responses to the Department of Health Looking After Children (L.A.C.) Records: Consultation Form. The method is seen as a means of enabling social workers to ascertain the wishes and feelings of ‘looked after’ children. By developing a system whereby disabled children can freely express their opinions, a climate is being created where they can forward an opinion through structured channels in a manner that is both consistent with their abilities and informs those responsible for their care of their particular wishes and feelings.

Ward and Flynn (1994) identify a chasm that exists between those who undertake social science research – ‘the research family’ – and those who are researched – ‘the poor relations’ – their perspective highlights the plight of the disabled – a story of disadvantage which remains constant as the individual proceeds along the age continuum. There is a lifetime of ‘their views (being) bypassed by the Specialist, Professional and Research Families’ (p.35-37), the socialisation process produces a climate where their views are not seen as important as they can be gleaned from carers and parents. The result is a picture of disability which offers few insights.

The consultation process described above has hopefully made some in-roads into dispelling the bleak picture painted by Ward and Flynn (1994). The methodology has the potential to provide other local authorities with the practical tools to tackle the chasm that is responsible for the silence between researchers and those with disabilities, particularly children with disabilities.

The method has endeavoured to make this piece of disability research relevant to the lives of disabled children receiving social services. By developing a communication method for children with disabilities and asking questions about their particular life experiences this is setting a scenario which echoes Lukes’ (1973) views on individualism where people require

…. to be treated and to live in a social order which treats them as possessing dignity, as capable of exercising and increasing their autonomy, of engaging in valued activities within a private space, and of developing their several potentialities (p.152-153).

Hopefully this will be seen as an anti-disablist measure as it provides opportunities for disabled children of all ages to express opinions and play an active rather than passive role in the care they receive. The development of this type of climate will encourage the expression of opinion and provide disabled children not only with short term gains in changing their current lot for the better but will also provide long term gains resulting from increased self confidence and self empowerment.

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